The importance of considering intersectionality when including black women in research

Celebrating our commitments

I work for the NIHR, and they, among many other research organisations, are committed to equality, diversity and inclusion in research. Historically these ambitions have often centred around ensuring a diverse or representative research sample for individual studies. However, it is encouraging to see in the last decade attitudes and approaches to research inclusion broadening to consider the whole research pathway.

Guidance from the NIHR Include Project⁷ highlights the importance of considering ‘under-served groups’ and helpfully describes many of the protected characteristics that we should all consider when designing and delivering research studies⁶.

• demographic factors (age, sex, ethnicity, education)
• social and economic factors (language, geography, vulnerability, stigmatised)
• health status (disabilities, impairments, multiple health conditions, pregnancy, addiction)
• disease specific factors (Rare disease)

One of the important takeaways from guidance such as this is that the research community needs to provide a better service for people in these under-served groups. Equally, their often comparatively lower percentage of inclusion in clinical research cannot be levied at their door. Instead, the socio-historic and political structures of society that frequently create more barriers and challenges for individuals that identify as part of these groups can lead to inadequate health and care research provision.

Under-served groups and research inclusion

So why is it important to include under-served or seldom heard groups in health and care research?

The NIHR INCLUDE researchers guide highlights several reasons why it is important to ensure that under-served groups are included in health and care research:

• Failing to include a broad range of participants means that results may not be generalisable to a broad population
• Various groups may respond differently to an intervention due to differences in physiology or disease state. Only by studying the effects of an intervention in a range of groups can we be sure that the balance of risk and benefit is favourable for a given group
• If clinicians lack evidence of the effect of an intervention for a particular group, they may be reluctant to offer the intervention to that group – clinical opinion then takes the place of evidence
• Successful delivery of intervention to target populations is complex, with logistical, sociocultural, psychological and biological differences all having an impact. Unless we have tested if an intervention can be deployed effectively to different groups, we cannot be sure that it will work in practice.

Under-served groups are by definition in the minority; because of this the generalisations needed for medical practice may not apply to them. There needs to be a deeper, more intersectional understanding of the experiences of underserved groups so generalisations within those groups can be made.

Black women and research Inclusion

Research literature is increasingly pointing to why black women need to be more systematically included in clinical research. For example, black women are 41 % more likely to die from breast cancer than white women, black women are 50% less likely to be diagnosed with endometriosis compared to white women and black women have the highest disadvantage of long-term health conditions when compared to the general adult population.

There is arguably less research literature on why black women may choose not to engage in research. Common schools of thought have included fear based on the historical exploitation of scientific myths of race inferiority and the dehumanisation of black women in pursuit of modern gynaecological treatments.⁸

Unsubstantiated beliefs that black women have higher pain thresholds⁹ may still be prevalent in healthcare today. I am saddened that only 15 years ago my friend experienced a midwife chastising her for not persisting with breastfeeding as ‘it’s easier for black women because your nipples are tougher’.

These examples of discrimination are not a combination of being black or a woman, but a unique experience in their own right. When considering the inclusion of black women in research, researchers cannot think of ‘us’ as individuals that sit across two under-served groups. Equally we must look beyond the potential benefits to the efficacy and effectiveness of our studies and consider the wider socio-political implications for black women when we engage them in research.

Serving the ‘under-served’: What about intersectionality?

The term ‘intersectionality’ is rooted in black feminism, specifically American critical legal race scholar Kimberlé Williams Crenshaw (1989). It is used to refer to the double discrimination of racism and sexism faced by black women. Although Crenshaw wrote with feminist theory and anti-racist policy in mind, I believe intersectional approaches are equally relevant to research inclusion and serving under-served groups.

Crenshaw argues that black women’s experiences and identities are marginalised by the tendency to treat race and gender as mutually exclusive categories.

‘Because the intersectional experience is greater than the sum of racism and sexism any analysis that does not take Intersectionality into account cannot address the particular manner in which black women are subordinated.’¹ (Crenshaw, 1989).

An intersectional approach considers power and privilege and their effects on experiences of inequality, as well as acknowledging that lives cannot be reduced to single and distinct categories such as gender or race. Intersectionality however, should not be understood as an additive approach to discrimination; each with their independent effects. ^3,4,5

Health and care researchers in the U.K. have often struggled to find  “culturally safe” methodological frameworks to help explore the challenges faced by black women. ¹⁰ Laura Serrant proposes using The Silences Framework (Serrant-Green, 2011) as An Intersectional Framework for Exploring Black Women's Health and Diasporic Identities.

The core premises of The Silences Framework are summarised below:

• Research and experience are both context bound;
• Inequality and socially assigned power impact on experiences of people in society;
• The researcher plays a central role at all stages, from determining what is researched through to affecting what or how evidence is produced and
• Finally and perhaps most importantly, equal importance is placed on marginalised views and personal experience as on “expert” opinion.

‘In the face of such disparities in health outcomes, understanding the healthcare needs of Black women within a medical framework which recognizes how health and well-being are impacted by identities and experiences of marginalisation becomes increasingly essential.’ (Laurent, 2020)

The benefits of completing the four stages of the framework is that it enables the researcher to ‘unite the “known” (what is evidenced and previously reported) and “unknown” (the silent, little researched or hidden aspects of marginalised experiences) in order to bring about greater understanding and ultimately, inform change.’ (Serrant, 2020).

On being a black woman

As I cannot escape the researcher in me, I began my preparations for writing this blog by throwing myself down a search engine rabbit hole. I wanted to know if my understanding of Intersectionality was sufficient to write something public on the topic.  Although I identify as a black British Caribbean woman that is not enough in of itself for me to write about black women's experiences. I cannot speak for all black women; I can only speak to my experiences and my understanding of why and how black women need to be represented in research.

I am pleased to say I have been validated, further educated and challenged on the topic of intersectionality by some great writers and groups. My understanding is that to truly recognise the importance of representation of black women in research requires researchers to think beyond mere differences in physiology, health risk and identity. It requires them to consider the deeper implications of access to and experience of participating in research based on the multifaceted power imbalances of being a black woman; in other words Intersectionality. I am not a sum of my identity parts and even as a black woman I do not exemplify a universal experience of all black women.

Black women have unique and powerful voices. Including our voices and perspectives in health and care research is of utmost importance to ensure treatments and service designs are politically sensitive and medically effective.

 References

1. Crenshaw, Kimberle´ Williams (1989), "Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics." University of Chicago Legal Forum 1989:139–67, p. 149
2. Using intersectionality to understand structural inequality in Scotland: evidence synthesis. Published 9 March 2022. Part of Equality and rights. ISBN 9781804351550
3. Christoffersen, Ashlee (2017), Intersectional Approaches to equality research and data. Research_and_data_briefing_2_Intersectional_approaches_to_equality_research_and_data.pdf (ecu.ac.uk), p. 3
4. Poverty and Inequality Commission (2021), 'Intersectionality: Revealing the realities of poverty and inequality in Scotland', Intersectionality: Revealing the realities of poverty and inequality in Scotland - Poverty & Inequality Commission (povertyinequality.scot)
5. Hankivsky O,  (2012), An Intersectionality-Based Policy Analysis Framework. Institute for Intersectionality Research and Policy, Simon Fraser University, Vancouver, BC
6. Witham, M.D., Anderson, E., Carroll, C. et al (2020), Developing a roadmap to improve trial delivery for under-served groups: results from a UK multi-stakeholder process. Trials 21, 694 https://doi.org/10.1186/s13063-020-04613-7
7. INCLUDE project website: Better Healthcare Through More Inclusive Research
8. Ojanuga D. The medical ethics of the 'father of gynaecology', Dr J Marion Sims. J Med Ethics. 1993 Mar;19(1):28-31. doi: 10.1136/jme.19.1.28. PMID: 8459435; PMCID: PMC1376165. https://jme.bmj.com/content/medethics/19/1/28.full.pdf
9. Deirdre Cooper. 2018. Medical Bondage: Race Gender and the Origins of American Gynecology. University of Georgia. https://resolver.ebscohost.com/Redirect/PRL?EPPackageLocationID=2797172.16216479.49256134&epcustomerid=s2947694. https://ugapress.org/book/9780820354750/medical-bondage/
10. Front. Sociol., 07 February 2020. Sec. Gender, Sex and Sexualities. Volume 5 - 2020 | https://doi.org/10.3389/fsoc.2020.00001. Silenced Knowing: An Intersectional Framework for Exploring Black Women's Health and Diasporic Identities. Faculty of Health, Psychology and Social Care, Manchester Metropolitan University, Manchester, United Kingdom